Finding A Silver Lining Every Day

Main Menu

4/17 – Our Game Plan

I promised I would report back after my check up with Dr. J at Mt. Sinai so here goes: I would have done sooner but got off to a late start yesterday and with all of the events happening in Boston what I am facing seems insignificant in comparison.

All good things though from the doc. Confirmed his email on the PET-CT scan that the lesions are getting smaller, the bones are scarring and the tumor mass on the left hip is SIGNIFICANTLY reduced. Helene and I saw some incredible pictures other than the ones I shared a couple of days ago of bones fusing together and growing back. Our human skeleton is quite incredible. Also, I have been cleared of most restrictions from an activity standpoint so I can lift, run and get back to regular workouts. That is great as I have gained about 15 pounds from these freakin steroids!

So – WHAT IS THE GAME PLAN FROM HERE? We will definitely do a stem cell transplant. I was hoping to avoid it but I will do what my doctor tells me to do. As I have said all along, If he will be the best doctor he can be then I will be the best patient I can be – and that means doing what I am told.

This obedience does not come without question however. I asked him about an article strongly against transplant by another doctor out of Los Angeles which brought up the quality of life issue. This doctor says that Multiple Myeloma is a chronic Cancer. In that case, why make the goal complete remission if we know that it will come back eventually. Instead we should manage the disease as chronic and maximize a patients QUALITY of life. Interesting point.

Dr. J agreed – when it comes to older patients. However, in my case, at 45 years old (young) we want to go for QUANTITY of life. The QUANTITY is important because I have many, many potential years to live. He argued that QUALITY of life is important but that he wanted to have the longest possible progression free survival because I have so many years ahead of me. In the younger patient QUANTITY matters as well as QUALITY. What’s the point of living a life of QUALITY if you only live it for a short time? Our goal is to find the right mix of QUALITY and QUANTITY.

Point taken – let’s do the transplant.

The GOOD NEWS is that I am able to put this off until January. I wanted to do this because I am getting extremely busy with work. I have an eight month window opening where we are going to start raising significant money and I need/want to take advantage of that. Also, summer is coming up which means camp visits, baseball games and pool parties at home – LOVE THE GRILL! Dr. J says I am not taking any more risk by putting this off until then. The BAD NEWS in all of this is that my insurance company, Blue Cross, has rejected Mt. Sinai and Dr. J as place I can have my transplant done. They would like me to go somewhere where they have a negotiated rate. Apparently QUALITY of care takes a back seat to QUANTITY of profit.

I have a wonderful woman named Christine at Mt. Sinai in the patient financial services department who is helping me navigate my insurance plan and find a way to appeal this. If Blue Cross rejects that appeal I will go so elsewhere. Dr. J doesn’t think it’s a big deal. He wouldn’t actually perform the transplant himself anyway. I can go to Hackensack where they have an outstanding Myeloma program headed by one of the top Myeloma doctors in the country as well. I just wish I would have known that by picking one of the top 3 doctors in the world for what I have (Dr. J) five months ago that my insurance wouldn’t cover this procedure. I am not against insurance companies being profitable but they ought to have someone who can CLEARLY lay out your coverage and help you determine your game plan from the start of treatment through the finish – not change the rules somewhere in between. EVERYTHING about health insurance is so unclear – ALWAYS.

The SILVER LINING here is that even if I go to Hackensack for the transplant, Dr. J will coordinate with the doctor there. They are friends and the follow up will be seamless. I am not going to sweat over this. If Dr. J doesn’t sweat it then I won’t either.

Until January – I will continue on my Chemo schedule of Friday and Saturday at Mt. Sinai. I will prepare the sign up sheets for anyone who wants to come with. My M Spike stands at .28. Hopefully by transplant time in January it will be down to 0.

All in all – this treatment is going almost exactly how we wanted it to go. I am responding very favorably to Chemo. I am ready for a transplant. AND – I have the option of doing it WHEN I want to do it – even if I don’t have the option of doing it with WHO I want to do it with.